Saturday, October 15, 2016

The Countdown Begins - Health Update

I feel like it has been a tremendously long time since I have given a solid health update. I have been so busy with pre-transplant evaluations, speaking engagements, and an onslaught of medical bills, I have neglected my blog a bit! Luckily, I have been pretty decent at giving small updates on my Facebook page - so if you are not already following head on over! I am going to start this update at the beginning of October, to make sure I don't miss any pertinent updates or events.

The first week of October I headed to my Ophthalmologist; my vision has quickly decreased over the last few months, to the point where I can barely see without glasses. Turns out my eyes are extremely dry - like so dry the film over my eye in my doctors words, "looks like a bumpy dessert." lol The film is supposed to be flat and moist, but my dry eye has caused the film to completely deform, leaving me with nearsightedness. My eyes are always noticeably red, and very itchy now. We started artificial tear drops 8 times a day, which still showed no improvement, so we moved to a steroid eye drop twice a day on top of the other drops. I went back a few weeks later to be evaluated and it seems my dry eye is pretty refractory to treatment since it is being caused by my autoimmune disease; my vision/symptoms didn't seem to improve at all on the new drops so my physician suggested placing plugs in my tear ducts in an attempt to keep my eyes moist! ....I have placed things all through my body, but my eye!? Yuck! lol Unfortunately, we wont get to find out if they help since they pose too high of an infection risk with my upcoming transplant. Hopefully the transplant will help the dry eye, or I may actually lose my vision due to the damage and inflammation being caused! Urg.

I saw my local cardiologist to review all my heart testing preformed in Chicago. He believes I will be okay during the transplant. His opinion eased my worry a bit since he is so familiar with my case. We spoke about the new electrical imbalances and diastolic heart abnormalities found while in Chicago and he did express that in a few years I will need to have a defibrillator placed - but that I shouldn't be worrying about it right at this moment.

I also saw my Scleroderma specialist. I had been feeling a bit off that week, but made it to the appointment after an extremely rough morning. I woke up that day with completely locked, and incredibly swollen joints! I was unable to move my writs or fingers in the slightest, and my hands, shoulder, knees, ankles, and elbows looked like someone had inflated them! Everything was bright red and so painful, I was in tears trying to get dressed. When my physician came into the room he took one look at me and sent me for a direct hospital admission! By that point I was unable to walk, or really do anything at all due to the swelling and pain. I was in the hospital for three days while we tried to get the swelling and pain under control. Since I had a fever the physicians all believed I had some sort of transient virus that caused my immune system to become confused and attack my joints. If you recall, autoimmune disease is an overactive immune system that attacks your body -- instead of foreign invaders like it is programmed to do. When autoimmune patients become sick our system goes berserk and causes us even more grief! After a few days of heavy anit-inflammatory meds I was released home.

Regarding my HSCT I have some awesome news! By the grace of God my insurance APPROVED TREATMENT! This means the majority of my procedure costs will be covered! That is a huge 150,000 burden relieved from my shoulders! Unfortunately, there is still an incredible out of pocket costs to receive treatment; copays, a large deductible, necessary prescriptions, months of hotels, eight cross country flights, transportation, etc, all fall onto my family. I will still need to raise at least 25,000 dollars to receive this life saving treatment! We are currently over halfway to the goal funds! Please visit to donate!
I also received my procedure dates this month. The transplant is broken into two phases, the first phase where you are preparing your body to produce stem cells, and the second phase where the transplant is actually preformed. The first phase is out patient, while the second phase is in patient.

  1. Nov 25th - Dec 18th Phase One:
    1. Nov 28th Pre-Testing - a few procedures to asses my pre-transplant status 
    2. Dec 6th Mobilization - one day of chemo to mobilize stem cells
    3. Dec 11th - 16th Neupogen - shots to over produce/migrate cells to blood from bone marrow
    4. Dec 16th Harvest - harvesting of the stem cells through apheresis
  2. Dec 18th - 25th Six Day Christmas Break at Home
  3. Dec 26th - (Unknown) Phase Two
    1. Dec 28th - (TBD) Transplant
      1. Dec 29th - Jan 2nd Chemotherapy - 5 days of intensive chemo to wipe out immune system
      2. Jan 3rd Stem cell Infusion - stem cells reintroduced through infusion
      3. (TBD) Stem Cell Grafting - waiting period while cells graft to my bone marrow
This is going to be a hellish two+ months so please bare with me as updates on the blog will be minimal. I do, however, want to share the reality of this treatment with the world, and will be doing daily, live video updates on my Facebook page! To support this journey you may make a donation to my transplant fund! You could also attend my super fun Singing For Stem Cells Karaoke Event this Thursday! Come out, sing a song, and save my life! We still need to raise about 10,000 more dollars to cover the out of pocket costs accumulated during this treatment, so why not karaoke for a cause?!

This month I also had the privilege of presenting in Missouri at the Scleroderma Foundations Heartland Chapter Patient Education Day! What a lovely group of people, passionate about bringing empowerment, education, and support to patients! For photos, visit my Facebook page linked above! Next off I am off to New Jersey to present at the Scleroderma Foundations Children's Conference Halloween weekend! As always, thank you all for your support! All of you that have shared my Singing For Stem cells video helped to raise over 11,000 dollars! Thank you for offering me your time, and hard earned money - they have given me a second chance at life!

    Sunday, October 2, 2016

    Hallelujah - Singing For Stem Cells Video

    "And even though it all went wrong, I'll stand before the Lord of Song, with nothing on my tongue but Hallelujah."

    When I first became sick I thought I was stripped of my voice forever - only to realize I could use it in a different capacity. I went from a classical vocalist, to a patient educator after my diagnosis, traveling all over the country to teach seminars on finding the beauty in illness. Now, as I fight for my life awaiting a Stem Cell Transplant, I find myself using my voice to ask for help from others. A voice can do an incredible amount of good, and I hope to continue to use mine after this life-saving treatment to educate, support, and empower patients. Please watch and share my video, or create your own, using the hashtag #singingforstemcells All proceeds benefit my stem cell transplant happening late this fall.

    Crowdfunding - The Thin Veil Between Life & Death

    Did you ever take part in the school fundraisers your junior high might have put on? The ones where you would go around and ask your neighbors, your coaches, and your parents friends to give you money for overpriced items such as magazines, wrapping paper, or cookie dough.  You were embarrassed, but you really wanted that hamburger shaped phone you would win at 30 items sold! Now imagine the stakes were a bit different: you are asking for money with nothing to give in return, and the prize for receiving the right amount - is your life. That is what it's like running a crowdfunding page such as GoFund Me, YouCaring, or GiveForward.

    I cannot tell you the cringe worthy, slimy feeling that shivers down your spine when you must crowdfund from those that already do so much to love and support you in order to simply afford necessary medical treatment. My failing body asks much physically and emotionally from those around me, and now I must drain them financially as well? How is begging the community to open their wallets because I became unexpectedly ill and do not want to die fair to me, or those donating? It leaves me conflicted knowing they are sacrificing so I can live. I feel a bit like a panhandler begging to receive others hard earned money with nothing to give in return. I know that when someone donates to a crowdfunding site they genuinely want nothing more than to see your treatment succeed and for you to lead a happy life lacking disease. However, it still eats me up knowing I have no way to repay their kindness - They are literally giving me life, and all I can do is say, "thank you." 

    I am a patient living the reality of not being able to afford life saving treatment because of its incredible cost. I am a patient who relies on crowdfunding, and the grace of others to keep me alive. You see, I am losing a battle against an aggressive autoimmune disease known as Systemic Sclerosis and unable to work. I am on oxygen, a feeding tube, and receive weekly visits to my home by a nurse for infusions - I am only twenty-five. Rare disease patients like myself often require expensive medical interventions in their lifetime but, over 95% of rare disease have not one FDA approved treatment. Insurance has deemed almost every life altering procedure, treatment, medication, and surgery that would benefit me, "off label," and "experimental." Therefor, the burden of the cost lays solely on the patients shoulder - our lives literally depend on crowd funding, which can deffer our treatments by months. I find myself in this situation currently, instead of receiving immediate treatment, my life saving Stem Cell Transplant will be delayed, simply because insurance doesn't want to invest in a rare patient; I must fundraiser the immense cost on my own. It not only is overwhelming for me, but for my family who has to watch as I slowly deteriorate while awaiting the, "Goal Funds" to be raised.

    High treatment costs, and health insurance inequalities force patients into situations such as bankruptcy, eviction, and even death. These are devastating epidemics that plagues patients throughout the country. We live in a society where lower and middle class individual pass away from treatable illness even though we have advanced medical technology available - they simply cannot afford it. Crowd funding has changes the lives of an uncountable number of patients; it has literally saved many of them from death. However, the fact that crowdfunding is the deciding factor to which patients live or die is a terrifying thought. That being said, thank you to anyone who has ever donated selflessly to help a patient in need. You made a serious difference in someones life that may have otherwise been lost.  

     Chanel's Youcaring can be found at